notes & essays on daily life with terminal cancer

About Marcy Westerling

I am a long time community organizer with a passion for justice and founded the Rural Organizing Project (ROP) in 1992. My 50th year was all about transitions the most exciting one having me take a leave from ROP as I accepted an Open Society Fellowship to advance my model of organizing at a national level. I was having a wonderful time!

I was derailed by a Stage IV Ovarian Cancer diagnosis in the spring of 2010 as I turned 51. I have been in treatment since then. (A more detailed back story is posted below this.)

I strive to embrace livingly dying, a phrase I credit to the late Christopher Hitchens even as I co-opt his language.For those who like seeing and hearing more than reading, click for the YouTube film of me explaining the concept of Livingly Dying https://www.youtube.com/watch?v=365W0sJq8BE

In the Spring of 2013 and, twenty months after starting the qualification process, I transition from traditional treatment efforts to stabilize my cancer in my home community of Oregon to a Phase One, Cohort Four immunology clinical trial at the University of Pennsylvania in Philadelphia. Quite a harrowing commute for medical care!

Finding myself on the cutting edge of medical breakthroughs (or one more splendid failure) I decided to go beyond my caring bridge site so that other patients and support people seeking ways to prolong lives have easy access to my experience.

I hope by bartering my body for medical advances I will be granted more time to find the sweet spots of living fully while terminally ill. All I can promise is to use my direct style to explore the challenges that contour this terrain.

In September of 2013 I finished the part one of five vaccine treatments and entered the maintenance phase. In October my ca 125 started a slow but incremental rise. I continued in the maintenance phase through March 2014. Scans showed my body with no evidence of disease even as my ca 125 continued to rise. It made sense to take a break and test my body. In early June, for the first time ever, I could feel cancer growing in my belly. Tests confirmed a rapid cancer surge that was inoperable. I rejected the conventional treatments offered, as as my summer of 2014 blog entries narrate, opting instead to travel to NYC to Bruckner Oncology for an experimental chemo cocktail of long infusions. In four treatments my ca 125 dropped 80% but the treatments let alone travel are hard.

I await the re-opening of the Part Two of the U Penn Clinical Trial for T Cell Depletion. I am patient # 4 on the waiting list with one patient being allowed treatment per month. Clearly, I am less in the market for a miracle and more hoping to hop from approach to approach, buying time.

Marcy Westerling

Backstory: Getting Diagnosed

photo the month before diagnosis

After First Surgery

First Chemo

Photo a month after diagnosis!

written by Holly Pruett
April 2010 Marcy is an incredibly healthy woman. Except for one thing: she has cancer. Fortunately, she also has an incredible will to live, so much to live for, a vast and committed community of those who love her, a top-notch medical team and an aggressive treatment plan.

This journey began on Marcy’s 51st birthday, March 25th, 2010 when she couldn’t deny that she was short of breath. Two weeks later the doctors realized it was something much more serious than bronchitis. Her lung collapsed and she had fluid drained from her chest cavity which turned out to contain cancer cells.

Because the cancer seems to have started in her ovary (confirmed by surgery in May) and has travelled to her chest cavity, it’s classified as Stage IV. While no one wants to hear Stage IV, being the exceptional person that she is, there are many reasons to expect Marcy to be around for a good long while.

First, the cancer appears to still be very small (golf ball sized) and not affecting any major organs. Second, her treatment team includes the surgeon considered one of the very best in the country. Third, the chemo prescribed (six cycles of one-day treatments, three weeks apart) is proving effective with other patients and Marcy has a 2:1 chance of having it boosted by a promising additional drug through a a clinical trial she’ll enter. Finally, there’s Marcy’s good health (which will be supported by a full regimen of complementary care – massage, acupuncture, nutrition – which she’s already enrolled in), not to mention her well-honed survival skills, and her great support system including her cherished husband Mike.

In the meantime, Marcy would love to have your support also directed to the wonderful staff at the Rural Organizing Project. Marcy was already on leave this year while she served as a Fellow with the Open Society Institute, and the ROP is being led by the awesome Cara. Let’s keep ROP strong too!

Recurred: October 2011with multiple visible tumors in abdomen, started Gemzar/Carbo. Carbo was stopped in March 2012, Gemzar in April. CT Scans showed some tumors stabilizing while new tumors appeared. Started Doxil in May 2012 with Avistan added in June. Doxil stopped in August due to mixed CT scan and burns on hand, feet and butt. Surgery to remove easily available tumors set for early October – this was not technically a second debulking (because conventional wisdom of the time did not recommend it) but the surgery did gather needed tumor for the Autologous OC-DC Vaccine Phase One trial I had been trying to enter for the prior 12 months. Started low dose Taxol with Avistan in October 2012 which I stayed on until April 2013. Disease reduction with no new growth shown in January and May 2013 ct scans! Care transitioned to University of Pennsylvania with first treatment (Cytoxan, Avistan, Vaccines) of clinical trial June 5th and 6th 2013. My ca 125 was stable at 7 from February 2013 – October 2013. (Unfortunately, I can have new cancer growing w.a ca 125 of 13.) Ca 125 has been slowly ticking upward starting October 2013 but it is not seen as an indicator because of the trial. While I have material for four more treatments, I am stopping the trial now (April 2014) as well as going off of avistan due to too much protein in my urine and increasingly hard to tolerate side effects. I am excited to return to local care at OHSU. When and if show disease progression I will return to UPenn for the T Cell part two portion of the trial. (Read summer 2014 blog posts for treatment updates.)

Backstory: My Life Before Cancer and the Journey to Now.

I was recently asked to pen this summary for an In Her Own Words column for the regional ovarian cancer newsletter (http://www.ovariancancerosw.org/). Since writing the summary was helpful for me, I thought it might also be helpful for readers of this blog to step back and look at the consolidated version of the arrival and survival with metastatic cancer. So here it goes…..

In my own words…..Marcy Westerling

At age 50, I was having a wonderful time and experiencing exciting work as a community organizer with a passion for justice. I had founded the Rural Organizing Project (ROP) in 1992.

Speaking against wars at home and abroad

My 50th year was all about transitions, the most exciting one having me take a leave from ROP as I accepted an Open Society Fellowship to advance my model of organizing at a national level. Then, in the spring of 2010 as I turned 51, my bliss was derailed by a Stage IV ovarian cancer diagnosis.

It started on my birthday with a vague feeling of heaviness. I wondered if the lovely cake family had made was proving too much for my system. The feeling didn’t lift and in subsequent days I mentioned a sense of someone sitting on my chest. Odd. I stayed active, but climbing slight hills on my bike required breathing tricks – it was like I was practicing being a woman in labor. A visit to the doctor led to a diagnosis of bronchitis, which didn’t make sense given how well I felt.

At the start of the appointment I mentioned that I also had intermittent stomach issues in recent months and I asked to talk about that too vs. waiting for the appointment I had made several months back to take place. They said, “No. Both your lungs and your stomach are big topics – you must choose one.” The appointment focused on my breathing. I had never before left a doctor’s office feeling silly.

In the next week my breathing became increasingly labored until I could no longer talk on the phone to make an appointment. That night I could barely climb the stairs to bed. I dreamt of an ambulance coming for me. The next morning my distressed sweetie found no argument as he drove me to urgent care.

Luckily, the doctor on duty was fantastic. Oxygen was given and x-rays were taken before he even completed my chart review. In a no drama way, he said I would need admittance to the hospital to figure out, “why the lung of a young, healthy, fit woman had collapsed.” He was so calm, so was I.

I texted friends as we commuted to the hospital thinking, “I’ll never again have such an exciting 15 minutes of medical fame.” I wanted everyone to know, “Marcy’s lung has collapsed!” It seemed cool.

The ER docs fast went from being comedic pals to sober workers as they narrowed the list of possible causes. They extracted two liters of amber fluid from my right chest, allowing immediate relief. I wouldn’t know until months later that that doctor told my friends in the hallway, “The situation looks grim.”

It would take a few exploratory surgeries and some false leads before I was officially informed on the side of the highway on April 22nd, 2010, I had some form of advanced metastasized cancer. For those who love drama, and the diagnosing of advanced cancer stories are always full of drama, details can be found in my short essay, The First Hello.

I have been in treatment since then. I often say, “I never went home after diagnosis.” Of course, I did but not really. My husband and I had laboriously and lovingly built the life we had wanted.

The happy couple 2009

It was based on the premise of staying alive and in good health. We lived in the woods with few neighbors. A half-acre pond was our front yard.

Our home at the pond

All around the pond were the orchards, animal pens and never ending year round beds for vegetables and flowers. We fed ourselves from what we harvested, sold eggs and imagined a small farm stand at the end of our driveway that would be the pension that neither of our cherished day jobs offered.

We loved our lives but with this diagnosis, I knew immediately any effort to stay alive would require building a new life – it would be in the city and it would include rigorous focus. My husband was more bereft than I at our loss. I had choice; he was along for the ride. Luckily, we live amid rich community and friends took over. They housed us in the city during frontline treatment, handling meals and facilitating decisions, allowing Mike and I to be dazed by the chaos of disease’s arrival.

By my last of six frontline chemotherapy treatments, my CA 125 was respectable and our move into our new city life was set. We started over. We built a life accepting the “new norm” and geared to bolstering my odds. They say that diagnosis via a collapsed lung means you have a ten % chance of surviving to two years.

I passed that marker in April of 2012 with little fanfare, as I was seven months into my first recurrence with my cancer far from tamed. An essay, Expiration Date, marked the occasion. That summer was especially hard as I experienced fairly extreme Doxil burns on my butt, hands and feet before being pulled off that chemo which had had minimal impact on my cancer. I coped by writing It’s A Dying Shame and some other essays. I started a support group across ages and diagnosis; it was for women wanting to talk about staring at mortality and also called It’s A Dying Shame.

I strive to embrace livingly dying, a phrase I credit to the late Christopher Hitchens even as I co-opt his language.This past November I did a reading at a coffee house of Livingly Dying essay excerpts and this September I travel to an Adirondacks retreat for a writer’s residency to decide where I might go next with the topic.

In April of 2013, twenty months after starting the qualification process, I transitioned from traditional treatment efforts to stabilize my cancer here in Oregon (OHSU) to a Phase One, Cohort Four immunology clinical trial at the University of Pennsylvania in Philadelphia. Quite a harrowing commute for medical care!

I had my official Phase One final treatment at the close of August. Odds are I will continue the commute for maintenance vaccines until I recur (and move to Phase Two) or run out of vaccine material in another year. But I await testing in late September and the resulting decisions. A great thing about treatment at Penn, though, is they don’t discard you from clinical trials if your disease progresses, the norm, they just adapt. I like that attitude. It matches what patients are forced to do.

Finding myself on the cutting edge of medical breakthroughs (or one more splendid failure), I decided to write a blog so that others seeking to prolong living with advanced cancer have easy access to my experience. It is called Livingly Dying – notes and essays on daily life with terminal cancer and if you like it, I hope you will spread the word to others. To date women from 45 countries have accessed the site.

Perhaps bartering my body for medical advances will grant me more time to find the sweet spots of living fully while terminally ill. While I stay saddened at how deeply interrupted my life was and how likely it is I will die younger than planned, I do marvel at how content Mike and I are with the life we rebuilt. We had a good life. We have a good life.

Somewhat Marcy I disliked ‘liking’ this About. How can I ‘like’ someone sharing their cancer diagnois? I think we need a button “In Empathy”. I thank you for recently liking my post Aging Well featured on Freshly Pressed. I can only imagine how challenging living life well is with a terminal diagnosis. As I am actually a hospice volunteer, I frequently read books on terminal illness. I am wondering if you have read Enjoy every sandwich? I did a blog on it : http://livelifeincrescendo.wordpress.com/2012/06/22/like-there-is-no-tomorrow/. I am now following you, as illness can be so isolating. I will be back soon to read the rest of your postings. Warm hug. wendy

Thank you, Wendy – delighted to ‘meet’ you. I am familiar with the work, life and death of the author you mention although I have not read his book. He was a dynamo in his field. Thanks for checking out my blog. I am eager to maximize people having access to this content but I am not very skilled in the process. So if you have any tips for this beginner, know they would be most valued. I also launch this just as I start a new chemo that seems to encumber my brain more than prior chemo recipes. Oh well. xo marcy

Thank you, Melanie. I believe there is some cool immunology stuff happening in your part of the world to give you and Seamus maximum together. I wish you the best and hope we stay in touch. If I can ever help, let me know. And know that I am quite envious of that gorgeous baby in your arms! xox

My sister (67) was recently diagnosed with OC in mid-June ’13 through CT scan. She has a mass about the size of an avocado. Her GP referred her to a GYN oncologist who wanted to do a biopsy to obtain perhaps 4 tissue samples to learn the cause of the cancer, and also stage and grade. She dug in her heels and said “No.” My sister had always avoided the medical profession (no annual checkups) and instead turned to her herbs, supplements and green smoothies hoping to cure her cancer by changing diet/lifestyle. She already has had 3 drainage procedures and cancer cells were found in the fluid. After endless searching on internet and exploring natural alternatives, she admitted that she was not feeling better, and in fact was having more pain. She called the GYN oncologist and scheduled the biopsy for next week. She really believed in going the natural route, but ultimately she discovered the natural route was more difficult than she imagined.

Cancer is a fierce aberration. I am extremely fit and my partners grows all our own organic produce year round and I was diagnosed at stage IV. I do a lot of complimentary and alternative therapies all of which are trying to allow our bodies to endure western treatments like chemo which are the only way to stay alive. I am glad your sister is opening up to all options. good luck!

Marcy, thanks for visiting my blog. I respect and admire you tremendously for the positive way in which you choose to frame your illness. I will follow your progress and send you my best healing vibes. You have a lot to stick around for:)

Hello Marcy! I followed you here from your comment on my blog. Thank you, I am enjoying your writing as well. I head to U of Penn tomorrow for the usual, injections and bloodwork and wonder if you and I will pass on the escalator or elevator. Always a busy place (not a good sign) and always a positive vibration in the air. At least I feel it. K

Dear Verna – forgive me for being so slow to respond.I just got the sad news that Julie from our Harmony Hill group died earlier this month. Thanks for the kudos on the writing. I saw your watercolors and my jaw dropped! You ARE an artist! I hope you are doing well.

I just finished Chemo Taxol/Carbo in November of 2013. I am currently taking Avastin and will continue till June. I was diagnosed with stage 3A Ovarian Cancer and even after all this time it still feels like it is someone else’s story. I had my first scan in December and it was clear, my CA level is 7 and all I can think about is the cancer coming back. Reading about your journey gives me hope. Keep fighting, keep your spirits high, and keep writing. We all have a lot to live for.

Good luck, Carrie. Yes, the constant unknown (or is it known?) and uncertainty is hard! It is really great that you ended frontline w.a ca 125 so low. And staying on avistan bodes well even if it is a harsh drug. It took me so long (years!) before my first thought every morning was, “Holy shit, I have terminal cancer.”

Please keep me posted if there is any more direct support I can offer!

Marcy: I loved reading your story. I was diagnosed with stage 4 a few months before you were after an ER visit where I simply could not breath. I have a few questions about your vaccine trial if it is ok to ask. 1) you mention that you looked into the free flights for people with cancer – did that not work out? 2) you mention that you waited 12 months before your surgery to get into the trial – why did you have to wait so long 3) you stated that they do not give you any relief for the vaccine injections – I am surprised not even lidocaine – why not ( I am such a baby) 4) do you happen to know if you can go back to conventional treatment (carbo/taxol if need be) after the vaccine trial

Thanks – Best wishes to you on your journey through this world of stage 4 ovarian cancer.

The free flights exist but they tend to be a. for shorter runs (eg small craft pilots) or b. major corporate routes. Portland failed both tests for getting to Philly. Sigh. But it was pretty easy to make flights my ONLY cost – for example, I found someone to adopt me and thus had free housing. And food – well, you need to eat anywhere and I would just get groceries (not that that is cheap.)

The waiting period is case and trial specific. Basically, they wont take you until your oncologist declares your disease stable. That took time for me. Then you have to time well with trial openings. A little crazy making.

Vaccine injections – I love your question and concern. The injections are to the lymph node and thus a bit deep and the path is designated by the ultra sound. Lidocaine takes time to work and all of this is happening rather fast. Plus, they really dont hurt as much physically as they do emotionally. I can make anything a big deal. They are not but I sure wont mind having a break from them.

You can go back to conventional treatment at any point. Hopefully, you wont need to!

Hi Marcy – I have had two Near-Death Experiences and am now age 79 and really looking forward to the time after my next body-death! Our spirits never die, only our bodies and after our body dies we find ourselves in perfect health and about age 30 – 35. The period between lives is very dynamic and full of learning and can last as long as we want it to. We never lose the freedom to make our own decisions! Before I retired I was the Director of Mental Health for twenty years and taught hundreds of my clients to trust their spiritual goodness and live in love and self awareness. My beautiful wife and I continue to live this way with our six wonderful children and their children who live here in CA, other states and also in France.

If any of this information interests you feel free to contact me and I will be happy to discuss any or all of this data with you. I will also be happy to send you resources, and the name of some excellent books.

But between now and whenever your body dies, please lighten up and forget about “hell”! It does not exist and our between lives time is full of powerful learning and exciting new experiences. I wish you the very best during the rest of this life and all of your other ones too! I send you and your husband much love and peace.

I am a community organizer concerned with the living hells we force people to endure through war and poverty but it has never crossed my mind to fret my death bringing me to a hell. I am optimistic and agnostic about the future.

Wow Marcy! I just started my own blog on chronic illness and your blog came up as a recommendation. Weird, since I knew “of you” through my work in Oregon at Lotus Rising Project in Medford. Look forward to your posts…Lori

I came across this article in my regular update email from Yes! magazine. Too my knowledge, I am not ill; however, I am intrigued by the notion of living in the moment. This notion has led me to read about Buddhism along with the huge presence of the Dalai Lama. I have not read your posts prior to the Yes! piece so that I stay in the presence. I may in due time. I am pleased that I can sign up for notifications of new posts from you. Live in peace with Love, Compassion and Forgiveness. ♡

Hi Marcy, thanks for finding my blog. And now I’ve followed yours. I’m actually extremely interested in hyperthermia treatment in cancer and have studied everything I can get my hands on, so I’ll be curious to hear more about your little experiment (which you wrote was just recently?). As you noted, Germany seems to be the most evolved in this area, and I know several people who have used a German clinic for 5-6 years. I’m also in Oregon, so your OHSU connection caught my eye. You may have also run across the Kanzius story if you’ve researched hyperthermia treatments…another interesting angle in exploiting this unique limitation in cancer cells. Best wishes…John Williams

Hi Marcy- I hear from Holly via Vida Lee that you’re up at OHSU with an obstruction. I’m so sorry. I follow your blog quite regularly but for some reason in mid to late January stopped checking in – so I am stunned to read of how much is happened since them. Cancer is a fierce force. You have done SO many things & researched so many ways to stave off this opponent. You are my own Angelina Jolie- I’m so impressed that so many women have accessed your blog. I have no doubt you have helped hundreds with your essays on livingly dying. Here’s to you Marcy Westerling!
xxxoxox Mary